Wednesday, December 20, 2017

All I Want for Christmas Is a Cure for This Damned Disease!

(For those receiving this via email, the following post contains videos which can't be viewed in email clients. Please visit the Wheelchair Kamikaze blog page to view videos (click here).)

I had a slight meltdown while serving as a semi-official MS patient advocate last week. Please let me explain…

I was invited to take part in a conference call organized by a significant multiple sclerosis consortium. The group is planning an MS conference which will take place over several days, with one of the days devoted to patients and patient education. My purpose on the call, along with several other patient advocates, was to help decide which seminar topics would be most interesting and useful for patient attendees of the planned meetings. In advance of the call I was supplied with a list of potential subjects and was told to be ready to choose which I thought should be included as part of the conference program.

As I perused the list, which included items such as "2018 MS Drug Pipeline" and "Mindfulness and MS", I found myself surprised and then increasingly angered by one glaring omission: there was no mention at all about the search for a potential cure for MS. This annoyed me to no end. After all, shouldn’t one of the primary goals of every MS Association, researcher, and neurologist be figuring out how to put themselves out of business by curing this damned disease? I thought it quite telling (and nauseating) that the planners of this MS conference hadn’t thought enough of this subject to even include it as part of the equation.

Despite assurances to myself that I would remain calm during the conference call, once it came my turn to speak I just couldn’t help myself. What began with my evenly pointing out that the prospect of a cure had somehow been overlooked quickly devolved into a sputtering, barely coherent chastisement of the entire MS medical establishment. Let’s not forget, the field of MS neurology was not so long ago considered a medical backwater, but has since been transformed into one of the biggest cash cows in all of modern medicine, all on the backs of outrageously expensive pharmaceutical products that may curtail disease activity but do absolutely nothing at all to cure MS.

Is this really where the MS status quo now resides? A place where we must accept that disease management is the best we’re going to get? Where patients struck with a hideous illness should be content or even grateful that the modern medical divinities have graced some of them with the ability to keep their potentially crippling malady in check for who knows how long? Where the torrents of cash generated by insanely priced drugs have so corrupted the MS establishment from top to bottom that the prospect of a cure seems unfit for conversation in polite company – why, for fear of spooking the goose that lays perpetual golden eggs? And what about those of us with progressive disease, who now have a whopping total of one approved drug that might, just might, slow the insidious decline of a subset of us by a less than dazzling 20%-25%? I readily admit that the disease modifying drugs currently available do dramatically improve the quality of life for many of the patients taking them– they also carry with them long lists of frightening and sometimes fatal side effects – but they do nothing at all towards stomping out MS. Forgive me for not genuflecting at the feet of the MS gods. How about this? Come up with a drug that cures my creeping paralysis and I’ll genuflect my ass off.

Some of the other patients on the conference call responded to my little tirade by saying that they’d given up hope for a cure in their lifetime. Though I do understand the frustration that lies at the root of this sentiment, to that I respectfully say “bullcrap”! Each of the top-selling MS drugs generates profits measured in billions of dollars per year; you’d think that some of that money might be spent looking for the cause of and then cure for multiple sclerosis. Instead, we have pharmaceutical companies devoting more money to marketing than to research (click here), and the funds that are spent on research are almost exclusively directed towards finding newer and better ways of manipulating the human immune system. NEWSFLASH TO MS RESEARCHERS: the aberrant immune response seen in MS patients is not the cause of the disease, it’s a symptom of some much deeper ill. Though the following analogy may be a bit of a stretch, treating MS by suppressing the immune system is like treating a broken leg with painkillers. It may make the patient feel better, but it doesn’t do a damned thing towards fixing the underlying problem.

At this point, you might rightfully ask, so, Mr. Smarty-Pants, if you’re so clever and smug and full of yourself, where would you suggest we start this quest for an MS cure? Well, I’m glad you asked. Even though I’m not a physician or researcher, I think I have a few good ideas. Here are just some of them:

We’ve known for years that the Epstein-Barr virus is somehow implicated in the MS disease process. In fact, there seems to be such a close relationship between EBV and MS that some researchers have gone so far as to state that if a person doesn’t have EBV, they don’t have MS (click here). Certainly, EBV alone doesn’t cause MS, but in conjunction with specific genetic predispositions, it may just be the fire starter. We now have the ability to map patients’ genomes, so shouldn’t there be at least a few researchers laser-focused on understanding the interaction between EBV and patient genetic profiles in an attempt to get to the guts of the problem? At the very least, a comprehensive database of the genetics of MS patients should be started posthaste so that gene variants and epigenetic changes can be detected and identified.

It’s been observed that HIV patients taking powerful antiretroviral drugs seem to develop MS in far lesser numbers than the general population (click here) and that HIV patients who already have MS often see their disease go into nearly complete remission once starting these drugs (click here). Again, why isn’t this a subject for intense scrutiny? Especially since one of the most commonly used anti-HIV drugs, AZT, has been shown to have anti-EBV properties (click here)? Please note, there was one trial of an anti-HIV drug, Raltegravir, on MS patients. This trial failed, but Raltegravir does not effect EBV.

HSCT, the form of stem cell therapy that first eradicates an MS patient’s immune system with strong chemotherapy drugs and then reboots it via stem cell transplant has been shown to put properly selected multiple sclerosis patients into long-term remission (click here). Shouldn’t these patients be carefully tracked and tested to see just why this treatment can be so incredibly effective? Is it simply that their reconstituted immune systems are no longer autoreactive, or might there be some other reason? Does HSCT not only put MS into remission but actually cure it, with those patients who see a resumption in disease activity somehow developing MS anew after coming into contact with some environmental trigger? The fact is that Epstein-Barr virus, when dormant, resides in immune system B cells which are wiped out during the chemotherapy-induced eradication of patient’s immune systems at the start of the HSCT process. This means HSCT rids the body of EBV. Does this allow the genetic triggers of the disease to then reset, putting a halt to the autoimmune process? A shot in the dark, maybe, but one worth examining…

Researchers at Harvard are currently studying the use of a century-old tuberculosis vaccine, called the BCG vaccine, to treat patients with type I diabetes, an autoimmune disease. They are reporting remarkable success, completely reversing the disease in some patients (click here). Apparently, the BCG vaccine works on both the immune system and on the genetic level, and thus could theoretically be of use not only in type I diabetes but across a broad spectrum of so-called autoimmune diseases. In fact, before the introduction of the MS disease-modifying drugs, there was promising research into the use of BCG to treat MS (click here), which seems to have been abandoned once money started rolling in from the first MS drugs. Why devote research monies to a 100-year-old vaccine that costs relative pennies when gazillions of dollars can be generated developing a never-ending stream of boutique drugs that profoundly alter the workings of the human immune system, the long-term ramifications of which are entirely unknown? As Deep Throat told Woodward and Bernstein, follow the money…

Okay, in the parlance of corporate speak, I’ve just spitballed a few ideas on which MS researchers devoted to finding a cure for the disease might focus their considerable brainpower. Of course, many of these ideas don’t have near-term blockbuster profit potential, so in the upside down world of pharmaceutical company driven medical research, they likely won’t get much attention. I’ve said it before, and I’ll say it again – capitalism is a wonderful system for creating wealth, but the marriage of capitalism and medicine is proving to be an unholy one. As long as profits take precedence over patients, as is currently the case, cures for any diseases will be rare beasts indeed.

MS organizations should never lose sight of the fact that their prime directive should be hastening their own demise by contributing to the effort to find a cure for the disease. The current status quo must not stand, and patients should not stand for it. I for one will not shut up about this topic, no matter how nuts it may make me seem to those less inclined to histrionics. If MS patients themselves don’t demand better, we will never get better, both figuratively and literally.

Since it is the season of giving, please allow me to recommend two MS nonprofits that are very worthy of your and your families’ and friends’ donations. I’m not suggesting the National Multiple Sclerosis Society, as, quite frankly, they have a vast contribution generating machine that sucks up lots of the cash that might be better directed at smaller MS organizations. Given the topic of this essay, I’m recommending two groups that are striving to find a cure for multiple sclerosis.

The first is the Tisch Multiple Sclerosis Research Center of New York (click here), which is currently in the process of building the largest stem cell laboratory devoted strictly to stem cells for MS, and will soon be starting the only FDA approved phase 2 stem cell trial on PwMS. In addition, the Tisch Center is involved in a wide range of groundbreaking research, from identifying MS biomarkers to understanding the root cause or causes of the disease, without an understanding of which there can be no cure.

My second pick is the Accelerated Cure Project (click here). The ACP is currently focused on the iConquerMS project, a crowdsourced database of information supplied by MS patients that will give researchers worldwide the opportunity to detect patterns and trends in the MS population that very well could provide the clues needed to come up with a cure for the disease. In addition to donating to the ACP, if you’re not already a participant in the iConquerMS project, I urge you to visit their website (click here) and start participating by answering some quick surveys. This is a patient-driven research effort and gives you a chance to join in the search for a cure.

Finally, here’s a little Christmas present to my dear readers. The following clips are from the exquisite but little-known 1995 film “Smoke”, one of my faves.. Despite the fact that there are no explosions or car crashes, this one of my favorite scenes in all of filmdom, just one friend telling another a compelling Christmas story. Is the story true or made up, and does it matter? The scene features a masterful performance by the great Harvey Keitel playing opposite William Hurt, and touches on just about everything that makes Christmas and human beings such endlessly fascinating subjects.

Please watch both clips to get the full effect (I recommend viewing full-screen), as I couldn’t find a single clip that encompasses the entire sequence. As an added bonus, the sequence finale features one of my favorite Tom Waits songs, Innocent When You Dream. If you’re interested in watching Smoke in its entirety, it’s available for streaming on Amazon (click here). Enjoy!

39 comments:

Thanks. As Johnny Rotten saying, "anger is an energy". I've gotten pretty good at spewing some of that anger out onto the pages of this blog. I suppose it's better than running over pharmaceutical company executives with my wheelchair… Then again, maybe not…

Marc,The possibility of anything sputtering or barely coherent coming from your lips is almost as laughable as Big Pharma putting any real effort into finding a cure for this gruesome disease. When I was diagnosed over 33 years ago I was told I was lucky-a cure was just around the corner. That's a damed long corner. These days, walking to the front door on my own power seems just as likely as a cure, except I have no ulterior motive in making it there.

Take my word for it, I think I'm barely coherent more often than not. Yes, I was told the same thing about a cure being "around the corner" when I was diagnosed 14 years ago. More delusional words were never spoken…

Oh man, PPMS here. Just a big big thank you for your articulate and righteous post. I'll be joining you in genuflecting my ass off should it be warranted. Until then, tell it. Oh, and you can set Amazon Smile to kick in a bit for the wonderful Tisch MS center to throw a few pennies their way when you shop Amazon. Truth tellers are rare; I'm so glad I found you.

Another holiday, another year without my son. Among his last words to me, "Mom, there will not be a cure for MS in my lifetime."He was 44 years old.He was right.I cannot begin to express the pain and angst I experience daily, as I read the MS Blogs. As I read the possible management strategies patients put forth. Then, I read the news about a US government that refuses to negotiate drug prices, mentions nothing about accelerated research globally for cures for diseases. I watch selfish, ignorant leaders deny even the most basic science for a vote.Am I bitter? You bet. I lost a truly wonderful son, and four children are now growing up without a father. Where is the justice? Where is integrity, compassion, knowledge?I read your words, and the tears run down my face. So much suffering. You, among others.So much waste of human talent , meaningful lives, and lost loves.Thank you Marc. Although your thoughts take me to a very dark place, I commend your voice, your bravery.May your words echo throughout the world. Nothing else, so far, has made a damn difference.Love,Hilda

Hi Hilda, the problem with the country today is that we are completely without true leaders, on either side of the aisle. There's nobody around to inspire, to make us strive for our better angels. And let's face it, in today's environment the great leaders of the past would never have survived. Roosevelt, the Kennedys, MLK – all men with serious flaws which today would obliterate any chance they differ have of doing good. Not sure if that's a good or bad thing, and certainly many of the behaviors they exhibited were reprehensible, but did the good outweigh the bad? Hopefully a new generation of leaders – both men and women – will emerge who, with a newfound conscientiousness, will not have the skeletons in their closets that would prohibit them from attaining leadership roles.

I know how your heart aches for your beloved George, and I still expect to hear his voice on the other end of the line when the phone rings in the middle of the day.

I think MS patients need to take a page out of the AIDS activist ACT UP movement, but many have been mauled into complacency by drugs that treat but don't cure. Actually, thinking about it, the same thing is happening to those with HIV. No cure, only cocktails of drugs to keep their disease at bay…

You have articulated what so many of us with MS feel and believe. Some years ago I read the MS Society, like the diabetes, heart, liver, kidney, etc. societies, do massive amounts of marketing to raise funds. I used to be a big donor to the MS Society, and when they were soliciting I received huge sets of cards, calendars, pens, pads with my name on them, etc. and then I realized – what on earth is all this costing? Is that where my donation goes, to guilt people into making more donations?

And then word went around that all the societies first pay for their own generous salaries and plushy offices, then another chunk goes to pharmaceutical companies and the doctors that push these non-cure drugs, and what's left over goes to research. I have no proof of this, but I firmly believe it's true.

Thank you, Marc, for bringing all these subjects to light, and just for being there. I wish you the best for Christmas, and for a new year that will be better for all of us.

Unfortunately, the NMSS is a part of the MS establishment. The society does do good work, and is a valuable resource for many, but as you point out is so deeply entrenched in the status quo that many of its activities seem more geared towards self-preservation than finding a cure. The primary goal of the Society should be to put itself out of business, everything else should be secondary.

Yes, unfortunately Harvey Weinstein was involved in many good films. I can't let it diminish the pleasure of the films, though. As reprehensible as Weinstein is, he wasn't really a creative force, just knew how to get movies made…

Holy Holliday rant! To say you've done it again would be an understatement. This one's exceptionally well written. So precisely spells out the problems. Explains fully why the angry tone you occasionally apologize for is the only appropriate response. Merry Christmas, And thank you so much.

Hope you had a Merry Christmas, and thanks for your kind words. How can one not be angry at the current situation? Especially when I tried to peek over the horizon and see only a never-ending line of "me too" drugs in late stage trials. Not going to solve the problem, that's for sure…

Well spoken and thanks. For six decades I've watched as "the upside down world of pharmaceutical company driven medical research" has perverted the medical profession and turned disease into profit. Those who made breakthroughs in the past would be shocked. Glad people like you speak up.

Roland, you are absolutely correct, medical profession has been perverted and corrupted, and those who made real strides earlier in the century would be shocked to see what has become of their colleagues. How on earth is it legal for physicians to become paid spokespeople for the pharmaceutical companies whose products they prescribe? Boggles the mind.

You have every right to be angry, Marc. Thank you for sharing your thoughts with such honesty. I remain hopeful that the cure is coming in our lifetimes. I have some researchers to add to your list. Dr. Jonathan Kipnis/Kipnis Lab Un. of Virginia is working day and night--he discovered the brain's lymphatic vessels and overturned 200 yrs. of thought on the brain's immune privilege. He's got some MS papers coming to press. He is an absolute genius, and was a student of Dr. Michal Schwartz at the Weizmann Institute. He and Dr. Maiken Nedegaard recently did some combined presentations on the brain's drainage system. They both remain convinced there is a connection between slowed or altered lymphatic/CSF/blood drainage, immune cell malfunction and neurodegenerative disease. The Gladstone Lab is working on fibrinogen leakage into brain tissue, and the faulty blood brain barrier. They'll have some interesting discoveries coming.

For a sub-group of patients like Matt Embry, George Jelinek, Terry Wahls and my husband Jeff--a heart healthy diet, exercise, UV rays and lifestyle program has halted and reversed MS. Jeff's MRI shows a reversal of gray matter atrophy and remyelination of lesions. His MS has reversed. So, there's something to the vascular connection--at least in some cases. But obviously, there's more to it for others.

Sadly, the MS societies and advocacy groups have hitched their wagons to pharma money. And it's hard for them to break free from the narrative of EAE and the auto-immune paradigm. We can't cure a disease we do not understand. And understanding means looking at every possible avenue and asking big questions. Not just the ones which fit a particular credo.

Thanks, Joan. Yes, I do see certain researchers attempting to shed light on some dark corners in the field of MS, and I fear that some of those corners have been kept intentionally dark. Certainly, diet and lifestyle changes can be dramatically effective for some patients, and definitely can be of at least some benefit to all. Unfortunately, for the majority diet and lifestyle will only lessen the impact of the disease.

It's well beyond the time that EAE should have been abandoned. Mice don't get ms. At this point, I completely discount any research reports based solely on mouse models of the disease. They are 99% of the time utterly worthless.

My own neurologist has stated that if a cure for MS was found, the scientist who discovered it would have problems getting their research published. The pharmaceutical companies tentacles reach far and wide. A crazy – and sad – state of affairs…

The only way to get the world to listen is good PR. Nobody talked about AIDS until Elizabeth Taylor dragged poor Rock Husdon on television and demanded attention. Doris Day kissing him on the mouth after he was famously Ill made headlines. One of the Osmond brothers was somehow cured from MS but they won't talk about it.

Great post! My friend was going to donate to the MS Society in my honor, but then she read that the CEO makes over 250,00. In fact more like 500,000. I think we should look at all MS organizations and CEO paycheck, no meed to look at big pharmas we already know what they make. Now what?

As I wrote in the article above, I've told all of my friends and family to donate to only two MS organizations, the Tisch Center and the Accelerated Cure Project. I think the Multiple Sclerosis Association of America is another good organization, but they are more geared towards providing patient resources. So, they do very good work…

I have RRMS, and as "luck" would have it, my oldest brother had PPMS (to make things more pervers: His older half-brother has MS too), he died last christmas aged 44. When he fell ill, and they all said "Don't worry, a cure is close". He always hoped there'd be a cure in his lifetime, but he thought that it wouldn't reverse his disability. Now I'm 31, and seem to be heading down the same road. I was diagnosed 5 years ago, and am already on a disability pension and dependant on round the clock care.

You know what the worst thing for me is? I used to be a neuropathology lab tech. There are awesome pathologists that want to find the cause and a cure, but they can't get the funding. I witnessed that first hand.

Knowing what I do, from the inside so to speak, I have no hope of a cure in my lifetime. Your anger was and is justified. I know I'm rambling, and don't really have a point.

Thank you for your blog. It means so much to me. Stay strong, and keep voicing your views.

So sorry to hear about your brother and his half-brother, and of your predicament as well. MS is a despicable disease.

What's even more despicable is the fact that well-intentioned researchers can't get funding. This should be a national scandal, but of course it's the status quo. Medicine needs to be restructured, from top to bottom.

I agree wholeheartedly with your thoughts on the NMSS, Big Pharma, and the lack of focus on a cure. I've been prodding people about the HIV/MS negative correlation for 20 years--but tend to see EBV as one trigger among many. Sadly, from personal experience, I believe BCG is a dead end. (I was vaccinated as a child in the UK. I still have MS...)

I'm still hanging my hat on the hypothesis that MS occurs as a result of faulty lipid metabolism and I'm waiting to see what eventuates from that research. I believe a cure is possible; I believe that there will be a cure for MS in the next 15 years. But the wait is long and full of terrors...

Hi Nichola, I agree with your analysis, but I do think that BCG still has promise. I don't think the vaccine is preventative for MS and other so-called autoimmune diseases, but it might act to put the brakes on active disease.

I'll have to do some investigation into the faulty lipid metabolism angle. Sounds interesting…

Marc, totally agree with you regarding our big pharma driven quest for the next cash cow drug. So many shenanigans are coming to light. Everything from transferring drug patents to Indian tribes to raising prices by thousands of previously cheap drugs. Obviously this has to change in order to make the true quest for an accessible cure drug a reality.

While fighting MS progression in 2014 I was diagnosed with multiple myeloma. A plasma cell cancer that eats away bone. Losing two vertebrae in my back landed me in a wheelchair and now a walker. Later the same year I had an auto stem cell transplant as part of the myeloma standard treatment. We (my docs and I) were very hopeful that the transplant would stop the MS progression as well. But while it did slow it down for a while, the MS progression roared back with a vengeance. Now I am in your camp waiting for a cure for MS while also doing what I can to expose the price gouging that big pharma has been perpetrating upon the patient community. This is why I am following developments like the Clemastine Fumarate trials closely.

I have discontinued all of the MS disease modifying drugs since they really had zero benefit for me anyway. For now I have chosen to continue taking the anti myeloma drug Revlimid that costs about $150K per year thanks to the latest Celgene price increase. The latest study data says I will live longer if I continue it. Celgene probably paid for the study but it's the best we have.

Hi Marc, if you don’t mind me saying, I think you are a gifted photographer with a sharp eye for color, light, and context. I connected deeply and emotionally with the images you’ve shared.

I also relate to the frustration you share in persuit of a remedy to MS, having researched each of the elements you’ve noted and more. My discovery ended, however, when I realized two things. Firstly, identical twins rarely die from natural causes of the same type. Secondly, Pharma companies don’t make money from curing diseases. They make money from treating their symptoms.

Once you are ready to accept this painful reality, your objectivity will lead you to recognize the real path to recovery: adequate Vitamin D (10k IU/ day); High intake of Anti-Inflamitory and Antioxidant Foods are the secret to healthy longevity, coupled with both an active exercise regiment and positive emotional environment.

These words you've written echo in the recesses of my head almost daily, whilst clinging to the gratitude and positivity I've forcefully required myself to have about the current state and future of MS treatments.

It's mind boggling to me that I, not an educated person, can see so blatantly where the research for a cure can be found. The trickle down by finding a cure for this shitty disease would be felt by MANY people suffering from autoimmune diseases.. not just MS. That's where my anger comes from I suppose. The big picture of it all.

So thank you for putting your thoughts into words. You've kept me from going batshit crazy and ending up on the front page of the newspapers for standing atop a building throwing all the pills, needles and uplifting magazines I've acquired over the years.

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...